Kristinade

Last year's celiac panel was fine, so my previous GI said "you're fine, bye," and that was that. That's why I went to another GI and I don't see him again until April. When I told internist today I'd given up gluten,he seemed glad to hear it. He says I should start to lose weight when the gluten and lactose is out of my system for good. I've gone from a size 10 to a size 24.

Went to do my lactose testing today, figuring it was a waste of time. My hydrogen level was off the chart high I was told I was severely lactose tolerant and that it's not the gluten,but the dairy products are my enemy. There goes my ice cream fetish. I'm starting to run out of things to look forward to.

I see my internist in about 3 hours. Wonder if he will agree I am not celiac or gluten intolerant? The GI ordered some stool samples and all the tests were fine.

This week I have been wolfing down the house. Okay, this week I have bronchitis but doesn't that usually make you eat less? I have put away a whole bag of Starburst this weekend, two bags of microwave popcorn and tonight an entire gluten-free pizza. I did go gluten-free and so my eating habits have changed. I am thinking maybe I am not getting enough nutrients or something of that nature? Which is why I have been taking a multi vitamin.

I don't know why I am binge eating but please help me stop.

I have been gluten-free on/off since Dec (cheated with the holidays) and I weighed myself this morning on my electronic scale.....239, down from 242. The bloating is starting to go away and even my mom saw the difference. I remember the days when I could go to the beach in a bikini and feel good about myself......not anymore. Hoping to get back into a bikini next summer---this summer might be too soon to lose all the weight. I think when I am skinny again, I might get my belly button pierced and walk around in Daisy Dukes and tank tops.

Went to a new GI since my previous GI discounted all my symptoms and complaints, basing everything on an IBS diagnosis. The new GI issued a lactose test in 2 weeks and I have to do a bunch of electrolyte, blood and stool tests to do before my next follow-up in April. So hopefully, I am getting somewhere.

Do you have any pain or issues with your Jaw ??

No, but I do have Hashis.

My neck is so swollen, I can barely wear a necklace. Is it from all the weight I've gained eating wheat products? I've been gluten free fo such a short amount of time and did manage to lose a pound; the bloating in my stomach is starting to go away but it's a painfully slow process. I plan to take photos of myself every couple months to track the progress.

Went to my parent's house for Christmas Eve dinner and there was very little "safe" except for the chips and dip. Needless to say, I pigged out and now have I will be tooting all night long. Feel like such a cow! My family, especially my brother and my dad, doesn't understand this gluten problem and they swear up and down I don't have it. Yeah, I guess it's normal to have one disease after another, right? They just don't get it and so I have to suffer for their ignorance. Glad I am not the only one with a "bad" family.

Mine was negative, too---I tested last year and my GI said I was fine to have gluten. I just did the Dr. La Puma online Celiac screening and my score was 24, which is very high and puts me in the high risk for Celiac. GI is dumb,dumb,dumb. Kristina is smart,smart,smart.

It's possible to have Celiac and have a negative blood test. When your scope and biopsies were done if they didn't take several samples the DX could have been missed.

It's also possible that you were sensitive to gluten, but hadn't yet developed Celiac disease at the time of testing?

If you've been eating gluten, now is the time to have another blood test, or scope to check for villi damage. If you've been off gluten those tests won't diagnose Celiac.

It's up to you whether you persue testing. You can go gluten-free on your own. If you feel better, I think you'll have your answer?

If having a diagnosis would help you stick to a gluten-free diet, if needed, ask for the testing. It also helps family members take it more seriously..and get testing too if needed.

There is a direct link between deficiency in Vitamin D and asthma....as well as fatigue when deficient also. I would have your vitamin D levels checked. Also during the winter is your lowest level of Vitamin D due to the sun's lack of strength.

I have been gluten-free for 2-3 weeks. Well, not completely gluten-free during this time as I cheat sometimes but mostly gluten-free.

Not know if this is asthma related (my lungs are clear) but for the longest time I have suffered with constant fatigue. It's worse in the winter----I want to sleep all the time and I am yawning more times than not these days, except lately I've been gasping whenever I yawn. No other breathing problems right now. This can't be normal or is it? I don't know what's normal for me anymore. Any other Celiac asthma patients suffer from this?

I have been 95% gluten-free for a week or so and my mom and I could tell a "slight" difference in my appearance. My stomach is getting flatter as each second passes will have a Barbie-like figure soon. (I wish!) The bloating has gone away somewhat and not going #2 as much. Here's hoping I can get into a bikini by next summer!

I can tell each time I consume wheat products. I had a slice of apple pie this week (it called out my name, what could I do?) and I paid for it with a burning rash that hurt like a mother. The rash must be a Celiac thing as it comes and goes.

I was born anxious....three docs thought I was bipolar and treated me as such. Mood swings,depression,anxiety. Listening to music, walking the dogs helps me. I kicked the meds and the docs to the curb...they made me feel like a wackadoodle. Too bad I can't sue them for not treating me properly.

I had anxiety before going gluten free, it was fairly mild and mostly social anxiety. Now I barely ever leave my house because I am so anxious, I will occasionally go to my mother's who lives less then 2 miles away but that is pushing it. So I am definitely there with you dealing with it and I hope that everyone who is dealing with this can get through it because it is horrible.

I saw this online. You take it before you eat gluten and it makes eating okay again.

Endos are better at treating diabetes than thyroid problems; I've been to over 5 different endos and unhappy with all of them. They are close minded individuals and only treat based on lab results,not symptoms and my thyroid issues were undertreated for several years. I recommend finding a holistic-based NP or MD......they usually are not covered by insurance, though.

Idiot doctor, yes ...BUT YOU just TOLD US in a post a few days ago that YOU FELT SO MUCH BETTER after going gluten-free! and felt lousy after being glutened. Right? So, gluten IS a problem for you.

I had both hypothyroid and Hyperthryoid symptoms in the 3 years I was undiagnosed. I felt like crap and they put me on meds and I still felt like crap. It was the gluten. Now, my thyroid functions NORMALLY. I take NO meds for it.

Gluten/celiac is OFTEN linked to thyroid disruption.

How could he have misread the thyroid panel AND the celiac panel??? . This guy is useless.

Your positive response to the gluten-free diet is more reliable than he is.

A GP is not going to be helpful with endocrine system disorders, hon.

You need an endocrinologist and I would get copies of the celiac panel and all your blood work and take it to that doctor. Tell your MOM you need verification. Any endo worth her salt will run the tests for thyroid dysfunction again.

I use CAPS for emphasis when I write, I am not yelling at you sweetie I want you to feel better!!

Hugs and good luck, Irish

Thanks for all the helpful information. I did start going gluten-free this month and I have noticed a difference in how I feel---not running to the bathroom and having the runs nearly every day is very nice! I cleaned out my pantry and gave my wheat items to my mom because I might as well go all the way and not half-way, you know? My mom thinks I have lost a little weight but since my thyroid meds were just increased, not sure if it's from that or going gluten-free. I am not as bloated, I have noticed, and I am going to a new GI after the holidays.

I went to my asthma doc this week--prob for the last time since he said I can see him "as needed." Each time I went to him he was always on me about my weight,thinking I eat too much, don't exercise enough and not doing anything to lose weight. When I told him I suspected I was gluten intolerant,the look on his face was priceless,like he felt like a bag of dog poop because he hadn't been able to figure it out himself.

I am new here and started going gluten-free this month so not very long. Yet I have noticed a difference in how I feel---not running to the bathroom and having the runs nearly every day is very nice! I cleaned out my pantry and gave my wheat items to my mom because I might as well go all the way and not half-way, you know? My mom thinks I have lost a little weight but since my thyroid meds were just increased, not sure if it's from that or going gluten-free. Still waiting for an official dx and going to a new GI after the holidays.

I had a hard time going gluten free. I was told, based on a test by my alternative doc, that my gliadin levels were high. I was suffering from chronic runs but didn't believe that this change could make ALL the difference. Stubborn or what? But I 'dabbled' a little in buying gluten free items. So silly now - when I think back. Gluten FREE - really means free. Finally it got to the point where everything I ate made me feel sick to my stomach. Then 2 years ago I finally bit the bullet. Then I gave up milk (but still had occasional milk products). I had suffered from Rhinorrhea (chronic runny nose) all of my life and it was from DAIRY! Now I am gluten free - dairy free and eat almost all organic. HUGE difference in every aspect. It isn't just a 'fad diet'. It's a forever change!

The first year I lost 30 pounds. Then, when I figured out that you can eat almost anything gluten and dairy free by just learning the substitutes, I put a bit of weight back on but still maintaining. My body thanks me every day for this change that took 4 years to finally implement.

I know of people who are suffering and they ARE just as stubborn as I was. I know a women with chronic runs who had her gall bladder removed and she's likely just gluten intolerant, but I can't see her ever making the change. I have reason to believe that the majority of the population is now affected by gluten and dairy sensitivities and they're just not aware. I think we're only an exclusive group in the sense that we have gone gluten free. I read that in the 'olden days' breads used to have something like 3% of gluten and now they have 12%. Perhaps people could have tolerated a small amount back then, but I don't believe many people have any tolerance at all now. Same with dairy.

Anyway - nice to join the group

Where to begin? I am 38, trying a gluten-free diet because ever since I was a kid, I had lots of problems and no answers to them. I had constant ear infections, learning disabilities,mood problems. As an adult, I developed asthma,(no allergies)GERD, IBS, Hashimoto's,depression/anxiety, dental problems. I have put on 100 pounds and very overweight,though I exercise regularly. My idiot pulmonary doc suggested weight loss surgery. I crave sweets and have floaty stools along with edema and swelling in my tissues. The GI tested me for Celiac last winter and it came back normal,so he said gluten was not a problem for me, so I continued my regular diet as usual. I just can't take being overweight and tired all the time. If I'm not Celiac, what the freak am I? Just frustrated with the dozens of doctors I've seen over the years who treat me like a quack job.